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Cholangiocarcinoma Foundation
United States
Приєднався 27 лют 2015
The Cholangiocarcinoma Foundation is a non-profit organization committed to finding a cure and improving the quality of life for those affected by cholangiocarcinoma, a rare but lethal bile duct cancer.
CCF Webinar: Demystifying Clinical Trials
This presentation will help patients to understand the purpose of clinical trials, the phases involved and will cover some common terminology they may come across if they participate.
To download the presentation, visit here: cholangiocarcinoma.org/wp-content/uploads/2024/08/Demystifying-clinical-trials.pdf
Recorded on August 22, 2024
To download the presentation, visit here: cholangiocarcinoma.org/wp-content/uploads/2024/08/Demystifying-clinical-trials.pdf
Recorded on August 22, 2024
Переглядів: 46
Відео
Dr. Flavio Rocha and Teresa M. Delcorso-Ellmann talk about CCF Research Fellowships
Переглядів 10112 годин тому
Dr. Flavio Rocha and CCF Board Chair Teresa M. Delcorso-Ellmann talk about the Cholangiocarcinoma Foundation’s Research Fellowship program, highlighting how it supports early-career scientists in advancing groundbreaking studies on bile duct cancer. Discover the impact these fellowships have on accelerating research, fostering collaboration, and ultimately driving progress toward better treatme...
理解您的临床试验结果 / Understanding Your Clinical Trial Results
Переглядів 7016 годин тому
“医学中最强大和积极的力量,是那些为自己发声的患者!” 我们的倡导主 梅琳达·巴基尼(Melinda Bachini)在她发送的每封电子邮件中都使用这句话作为签名。作为一名已经存活14年的胆管癌幸存者,梅琳达亲身体验到,随着患者教育的提升,知识、理解和希望随之而来。 我们很高兴分享“理解您的临床试验结果”视频。该视频由Incyte、胆管癌基金会(Cholangiocarcinoma Foundation)和Target Cancer Foundation合作制作,是一个无价的、对患者友好的资源,帮助患者理解他们的临床试验结果。 我们鼓励您通过电子邮件和社交媒体广泛分享这个视频。
Entendiendo los resultados de tu ensayo clínico
Переглядів 5916 годин тому
"¡La fuerza más poderosa y positiva en la medicina es la de un paciente que aboga por sí mismo!" Nuestra Directora de Defensa, Melinda Bachini, utiliza esa declaración como firma en cada correo electrónico que envía. Como sobreviviente de colangiocarcinoma durante 14 años, Melinda sabe por experiencia propia que, con la educación del paciente, viene el conocimiento, la comprensión y la esperanz...
A Survivor’s Guide to Planning: Ensuring Peace of Mind
Переглядів 11621 годину тому
Carli Good and Lynn Lazzaro discuss the importance of organizing personal and legal affairs following a cholangiocarcinoma diagnosis. Lynn shares her experiences and emphasizes the peace of mind that comes from being prepared. The conversation is part of the Cholangiocarcinoma Foundation's efforts to support patients and families with practical and emotional guidance during challenging times. ...
CCF Webinar: Pressurized Intraperitoneal Aerosolized Chemo (PIPAC) for Patients w/Peritoneal Metas
Переглядів 21014 днів тому
Up to 20% of biliary tract cancer patients have peritoneal metastases, resulting in symptoms of ascites, abdominal pain, and potential bowel obstruction. Pressurized intraperitoneal aerosolized chemotherapy (PIPAC) delivers chemotherapy directly to the peritoneal space, which could potentially improve treatment efficacy with minimal systemic toxicity. This webinar is to raise awareness for a ph...
CCF Webinar: From Passion to Action - Engaging Your Community in Cholangiocarcinoma Fundraising
Переглядів 4114 днів тому
This recorded webinar highlights the vital role that Community Fundraisers play in the success of CCF. The session features CCF Fundraisers and Legacy Caregivers Eric Parker and John McDonald, who share their experiences hosting two of the longest-running CCF fundraisers. They discuss how these events honor loved ones, bring in critical funds, spread awareness, and unite communities for a good ...
Una conversación con: Pedro Cruz y Ángela Sánchez Un vistazo al Colangiocarcinoma en Español
Переглядів 19814 днів тому
Pedro y Ángela nos abrieron las puertas de sus casas y sus vidas para permitirnos conocer su experiencia con el Colangiocarcinoma, cómo llegan a la Fundación de Colangiocarcinoma (CCF) y cómo esta ha sido parte de su proceso con este cáncer. Si tú o un familiar o persona cercana a ti fue diagnosticado con Colangiocarcinoma, no dudes en contactarnos. ¡Estamos aquí para caminar contigo en este pr...
CCF Webinar: A clinical trial for a potential new tHER2apy for biliary tract cancers
Переглядів 25728 днів тому
This presentation covered the Human Epidermal Growth Factor Receptor-2 (HER2) protein and its role in cancer, with a focus on biliary tract cancers. It also discussed how cancer treatment could be designed to target this protein. Additionally, it introduced viewers to a potential treatment targeting HER2 for cancer therapy. Viewers were introduced to Zanidatamab and some results from a recent c...
A conversation with Fred Neubauer about the International Cholangiocarcinoma Patient Registry
Переглядів 270Місяць тому
In this video, Fred Neubauer talks about the International Cholangiocarcinoma Patient Registry. He explains its purpose in collecting data from cholangiocarcinoma patients to help researchers understand the disease better and develop targeted treatments. Fred highlights the importance of patient participation in advancing diagnosis and treatment options for this rare bile duct cancer. For more ...
Cholangiocarcinoma 101, Part 2
Переглядів 255Місяць тому
This is Part 2 in a series to explain cholangiocarcinoma and walk patients and their caregivers through diagnosis, treatment, care, and resources.
Cholangiocarcinoma 101, Part 3
Переглядів 205Місяць тому
This is Part 3 in a series to explain cholangiocarcinoma and walk patients and their caregivers through diagnosis, treatment, care, and resources.
Cholangiocarcinoma 101, Part 1
Переглядів 274Місяць тому
This is Part 1 in a series to explain cholangiocarcinoma and walk patients and their caregivers through diagnosis, treatment, care, and resources.
CCF Webinar: High Risk-How we talk about complex treatment matters
Переглядів 178Місяць тому
Patients with challenging-to-treat cancers may be offered advanced treatments that can be complex and require significant effort. For example, surgery for cholangiocarcinoma carries specific risks, and the potential benefits can vary from patient to patient. Using a series of case discussions (de-identified), we will present some illustrations of how communication between providers and patients...
CCF Webinar: Immunotherapy (Rilvegostomig) plus chemo for patients with BTC after resection
Переглядів 2482 місяці тому
Patients who undergo curative surgery for BTC (Biliary Tract Cancers) may relapse and adjuvant chemotherapy is given after surgery to lower this risk. This study will evaluate if the addition of immunotherapy to chemotherapy can reduce the risk of relapse more than chemotherapy alone. This webinar is to raise awareness of a Phase III study to evaluate an investigational immunotherapy agent, ril...
Making Sense of Your Biomarker Report/Entendiendo tu informe de biomarcadores
Переглядів 472 місяці тому
Making Sense of Your Biomarker Report/Entendiendo tu informe de biomarcadores
Making Sense of Your Biomarker Report/解读你的生物标志物报告
Переглядів 422 місяці тому
Making Sense of Your Biomarker Report/解读你的生物标志物报告
CCF Webinar: What tools are used to diagnose and monitor cholangiocarcinoma?
Переглядів 3692 місяці тому
CCF Webinar: What tools are used to diagnose and monitor cholangiocarcinoma?
CCF Webinar: Choosing the Right Cancer Doctor for You
Переглядів 2343 місяці тому
CCF Webinar: Choosing the Right Cancer Doctor for You
Cholangiocarcinoma Foundation Innovation Grant funded by the Bachrach Family Foundation
Переглядів 913 місяці тому
Cholangiocarcinoma Foundation Innovation Grant funded by the Bachrach Family Foundation
First recipients of the Cholangiocarcinoma Foundation's Innovation Grant
Переглядів 973 місяці тому
First recipients of the Cholangiocarcinoma Foundation's Innovation Grant
AC24: Science Day 2: Patient Perspective/CholangioConnect
Переглядів 3913 місяці тому
AC24: Science Day 2: Patient Perspective/CholangioConnect
AC24: Science Day 2: Caregiver Perspective
Переглядів 2313 місяці тому
AC24: Science Day 2: Caregiver Perspective
AC24: Science Day 1: Session I - Global Challenges/Global Solutions
Переглядів 953 місяці тому
AC24: Science Day 1: Session I - Global Challenges/Global Solutions
Best Video . thanks for sharing
Thankyou for focusing on Cholangiacarcinoma. My wife is newly diagnosed with a large mass that has FGFR2 mutations. She has aleeady fought stage 3 breast cancer, surviving 5 years cancef free. I hope you and your works will be able to make it possible to have better and better out comes. Mahalo and Aloha.
Иксперементы. Побочки больше, чем от химии, быстрей убивает. 9 августа умерла моя девочка, кй было всего 21 год, эта терапия её убила.
Is a external drain better than internal
This is amazing. I may need it some day. And I had 2 family members who could have benefited. Thank you, Doctors!
your treatment would haxe been good to share in your video
I think the recording is broken, there seems to be no speaker audio on this video.
You guys are doing a great job! keep it up!!
how common is this mutation?
I am going to Mayo. STAT
I hope everything works out ok for you
3 минуты - все по полкам и понятно) благодарю❤
Can you find out if you have thyroid cancer by taking blood from the arm
Hope you are feeling better today.
Hi Cholangiocarcinoma Foundation, I watched your youtube videos & content is good but video SEO score is very low & that's the reason your video don't getting views. I saw that you are struggling with views & subscribers. I'm as a youtube expert & video seo specialist, I'm able to help you to fixed it. I've a Big Vision for your Channel growth. can we talk? let me know.
¡Que grande eres, Angela! 💚🩵💙💜🤎
Is biomarker testing the same as genetic testing?
Thank you for bringing to our attention such valuable scientists . I am son of an orphan women who has orphan disease. She has a bile duct cancer but doctors can not identify her tumor type. Unfortunately geography is destiny here in Turkey.
So great to hear a success story. I hope that you have continued response to this beast of a cancer
3:07
Thank you so much for the opportunity ❤
Congratulations, Katie! Thank you for the extraordinary efforts and care you've put into everything you do!
Great video, listen more, the answers might be in what the mentee is saying already. This can be used in many parts of lives.
Congratulations Katie... very well deserved!
Excellent training video.
Wonderful presentation 😊
I hope we can find out how things are now...2024...❤
God bless you....
My husband has cholengiocarcinoma. I like to discuss immunotherapy. I am retired Md./pathologist, and family doctor.tumor is in rt lobe ,posterior.
Great video, may I ask you, if is possible to administer drugs through the drainage? Any risks?
Do you have symptoms
wow, fantastic. very happy for you
As Patty's big brother, we saw first hand how your support helped her through this difficult experience. thank you.
Thank you for give us the great spirit you have
Wow! A success story. That's great.
Is it possible to Buy CTX-009 from india
beautiful video, thank you very much for sharing. from a fellow cholangiocarcinoma caregiver - Perth, Western Australia. i've passed it on to Mum & Brother (also caregivers to my Dad who's got CCA).
I have the exact same thing!!! Thank you for sharing your story!!! I go to MD Anderson also, Dr. Javle!!!
Very effective info.. I am a recruiter and this would help me to hunt the right talent . Gonna follow for more videos
My mom has kragG12D cholongiocarcinoma stage 4 can I get any help ?
3:50
I am so glad for Matt that he succeeded in beating his cancer using a newly discovered biomarker for cholangiocarcinoma. As an oncologist and biochemist by training I am aware of the ton of wok that goes into developing new molecular markers for diseases - in parallel to my Diploma / Master's thesis I already worked as a scientist in a team that was developing molecular markers for coronary heart disease (we finally discovered troponin 1 to be a reliable indicator of myocardial ischemia), and during my MD and PhD theses I developed molecular markers for the severity and readiness to spread of breast cancer. Turned out that the probes were not only useful for this purpose but could be applied towards staging a variety of other cancers. 40 years later I am now retired but can look back of a huge number of discoveries that happened in the biomedical field, saving and improving the lives of hundreds of millions of patients worldwide. I am still thrilled to the core to have been part of the beginning of this revolution, but at the same time have to make an appeal: we need many more biomedical scientists, much more research facilities, and most important: much more funding for this work. The dollars we spend today may, no, probably will save many lives of our children, if not also our own. Areas that urgently need to address are eg heart diseases, cancer, age-related issues like eg Alzheimer, the skyrocketing field of mental illnesses, and the good ole infectious diseases that are currently staging a dramatic comeback. Any amount you can spare and donate to any of these causes will help a patient to live longer and better. Thank you !
Jan 10th, 2024 is the date of my Whipple. Diagnosed Feb 28, 2023. Looks promising. How are u doing? Today is Dec 29, 2023.
Alive and well. Thanks.
Very interesting and intriguing I’m wondering do you mind emailing me any recent information regarding this project?
55 years ago, my non-medical father helped a woman get rid of a horrible cancerous tumor with plain carrots juice and water for 2 months. They were in South America and no access to medical system, except for testing. It worked. She raised her children. My mother 92 was having radiation for metastatic squamous cell carcinoma in the trigeminal nerve. Couldn't chew. Not getting much better. She and I decided to try very low carb. Not easy at 92. She is doing much better, no pain, no diabetes either. Lost some weight. Stopped losing weight when we adjusted the amount of food. Still eating lentil and cauliflower bread with coconut or almond almond flour. Some chicken, green beans, zucchini, broccoli, grated pickes, blended saurkraut and olive oil dressing, etc. And we learned that there are still so many different foods available in a low carb lifestyle! Even if you can't have teeth! Would be easier if she could eat salad.😅
14:55 molecular landscaping
Julie - so glad you’re doing well. It’s looking up, and please keep up that positivity!
Praying for my brother Stage 3, age 69. Thank you for posting this message of information and HOPE.
@@LinFromMinn similar my father last words.. he said I want to get back home and next day he died... .:/ in February.. just 57 yeases old.. stay strong... :( know how u feel..
My brother's condition is deteriorating. But as to how long he has to live, hospice says days. I watched so many videos about bile duct cancer and those who are surviving. But for every one of those, it feels like there are 100 that all had the same outcome, death within 3 weeks to 10 months. One set of comments on different videos mentioned something that many people feel are being ignored: bile duct cancer is brought on by parasites. One reader suggested hospitals and doctors are covering that fact up. What their motivation for a cover up may be, I cannot fathom. So perhaps the theory is maybe sort of a conspiracy one. But if parasites are at all involved, we need as much research as possible. No cancer is "better " than another, but as far as treatments go, there are differences. And there are stages. The newer forms of research must also be better shared with the public. This is called for now-- and then should be updated at least weekly. Maybe the foundation can serve as a "clearing house" and resource center for helping with dissemination in a current manner. It feels like they took forever to begin to treat my brother and it is so frustrating. Much of what I read says that immediate and decisive decisions are needed since time is crucial, even critical. I urge all to become involved as soon as possible and be a STRONG advocate for yourself, as well as your loved ones. Keep fighting. Keep being persistent.